Medication increased...need advice please?!?!?

[Careforme]

Mum been on Donepezil seven years.

Diagnosed epileptic Jul'16. Put on Tegretol medication whereby mum was just unconscious where she had hospital admission.

Mum now on sodium valproate which started off originally 100mg. After several more seizures and prolonged post ictal phase she is now on
750mg.

The past three days mum has slept a considerable amount of time and has been increasingly jumpy with some violent jerks. She awoke this afternoon and was like she was about to go into full blown seizure.

Why is this happening? I know she will be prone to seizures but the past three days have been frightening watching it. Literally no break from all the jerking.

The doctor who came see mum at CH is going contact neurologist however, the nurse tonight told me it could take weeks?

I am just wondering if anyone has experienced this with this medication and if so what else can we do?

I am actually going call the doctor in morning and also my parents own GP to ask. When mum was admitted to hosp over xmas period they had to get in touch with neurology there and then as my mum was in bad way.

Surely they can get an answer before weeks waiting and if there is any other treatment it can be done. Either way surely someone can tell us soon either we can give something else to control her or if infact there is nothing more we can do

Thanks everyone x


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[Careforme]

Sorry I should also have said Mum was taken off Donepezil in Jan '17 as doctors said this could be contributing towards seizures as well as being on sodium valproate.


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[Shedrech]

hi Careforme
sorry I have no experience of these meds or your poor mum's situation
I just know how I'd be feeling, so wanted to at least sympathise with you
I'd definitely be contacting everyone I could think of to get some information - hope some medic can tell you something useful tomorrow
best wishes

 

[Linbrusco]

Hi Careforme, Your poor Mum .
cant comment on Dementia/seizures, but can comment on Epilim/seizures.

My husband had 2x brain resections for a brain tumour in 2004/2005.
He was immediately put on 1500mg Sodium Valproate ( Epilim) right from his very first tonic clonic seizure. (grand mal seizure) Dose is dependant on weight.
Between 2005 & 2006 he had break through partial seizures resulting in loss of speech.
The seizure, itself will depend on the area of the brain affected.
DH's tumour was on the left frontal/parietal, and on the speech region.

Oncology (Not Neurology) just kept increasing his Epilim until he was on 2500mg.
He was very lethargic and sleeping 12 hrs a day.

Beg of 2011 he had tonic clonic seizure out if the blue. His brain MRI was clear, but a urine test showed he had E Coli bug.
Any type of infection can upset the therapuetic dose of anti seizure meds.

Hospital wanted to increase his dose to 3000mg. I persuaded DH to see his original Neurologist from 2004.
He was horrified that over the years his dose kept on being increased.
Sodium Valproate can get to a level where an increased dose, has no beneficial effect.
Also blood tests to check levels can not be relied upon.
Neurologist decresaed Dh's dose to 1500mg a day and introduced a second anti seizure med- Lamictal (Lamogotrine)
Touch wood he has had no seizures not even partial ones in now 6 yrs.
He is also not as lethargic.

Neurologist said sometimes 2 different seizure meds has better succes than just one, and sometimes it may also mean trying different types to see what works.
Sodium Valproate is generally first choice.

 

[Careforme]

Wow Linbrusco! Thank you so much for posting your advice. I am so sorry you have had to deal with this too.

Thank you so much for your advice. I know there must be something to try help stable mum and I am still wondering if there is an underlying infection too.

I have called the doctors first thing this morning and I am waiting a call back. I hope it's soon and just hope I am not fobbed off. I won't be taking it though. I must say the doctor has been great who has came in to see mum at CH and I just hope and pray when he calls I will have an answer after it and a plan put in place quickly.

I will let you know the outcome. Thank you x


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[canary]

Im sorry your mum is having such a bad time
My OH has epilepsy due to a brain injury 20 years ago. He started off on sodium valporate, but over the years the seizures have slowly got worse and his medication had to be increased, then changed, then other anti-convulsants added. I think that his dementia is further damaging his brain and makes it more susceptible to seizures.
It takes a while for the drugs to "kick in" - usually about 2 or 3 weeks, so you cant tell at first whether its working or not. Also, every time my OH has been put on a new drug it has had to be introduced gradually over a couple of months. So you may not be seeing the full effect yet.
One of the main side effects of these type of drugs is lethargy and tiredness, but wanting to sleep after a seizure is also normal. Sometimes its difficult to decide which it is.